What is the Lived Experience of People Affected by Cancer, Family Members, and Their Treatment Team Engaged in Patient Initiated Follow-Up and Preferences in Cancer Care: A Qualitative Systematic Review

Objectives: This qualitative systematic review aimed to explore the lived experiences of people affected by cancer, their families, and health care professionals involved in patient-initiated follow-up (PIFU). It sought to understand how PIFU is experienced in practice and what factors support or hinder its use. Methods: A qualitative systematic review was conducted using the Joanna Briggs Institute meta-aggregation approach. Six databases were searched in July 2025. Studies were included if they reported qualitative data on the experiences of PIFU in cancer care. The findings were synthesized into overall findings and reviewed by multiple authors. The review followed PRISMA guidelines and was registered with PROSPERO (CRD420251103470). Results: Eight studies (all UK-based) were included, involving 120 cancer survivors, 63 health care professionals, and 3 family members. Four synthesized findings emerged: (1) PIFU empowers patients but requires risk-based and personalized implementation; (2) PIFU supports self-management, but disparities in education, support, and communication exist; (3) PIFU is valued for cost-efficiency, convenience, and emotional relief; and (4) some patients still require face-to-face reassurance. PIFU was considered more suitable after a period of adjustment post-treatment and less suited for patients with high anxiety, limited health literacy, culturally and linguistically diverse, or psychosocial vulnerabilities. Conclusions: PIFU can be a valuable follow-up option when aligned with individual capability and support needs. Implementation must consider psychosocial readiness, access to care, and preferences for reassurance. Implications for Nursing Practice: Cancer nurses play a key role in preparing patients for PIFU by providing tailored education, supporting self-management, assessing readiness, and offering ongoing support. A nurse-led, flexible approach can ensure that follow-up care is both safe and person-centered.